praying, fighting, crying together for Ella Joy

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Today was a challenging one. We recently found out Ella Joy’s leukemia blasts are rapidly increasing. We are devastated and heart-broken. We would like to ask for you to rally the battle cries and prayers for Ella Joy. Although the news we keep receiving is not good, God is good, and we pray He would go before us, and we would not be discouraged (Deut. 31:8).

Mike will soon be doing a lot of traveling, and meeting with the transplant team has been a very difficult thing to plan out. Please pray that we would be able to connect in a timely fashion, and that they would be able to accommodate and come to Seattle Children’s Hospital so that I will not have to leave Ella Joy’s side. If not, please pray we would be able to communicate by phone as Mike will be traveling and most likely would not be able to physically be at the meeting anytime soon.

Ella Joy’s weight has also been decreasing. Please pray that we would be able to work with insurance for tube feeding supplies as I have already called and they confirmed they will not cover this medical expense at all.

We are so thankful that my sister Joanne cancelled her spring break plans so she could come to Seattle and help take care of Asaph for a week. Please pray that things would work out smoothly as Mike’s parents will come to help out too.

We are greatly encouraged by your unceasing prayers before His

throne room. Please do not give up! Thank you!

3/26/2017 Sunday

Ella Joy had lost her appetite after the high dose chemo started. She had also lost her livelihood to do the things she used to love to do. Yesterday was the first day she actually ate more than a mango! She had Appa get her 2 egg white delight sandwiches from Micky D. and thanks to visiting friends she also ate duc and Korean rice cracker snacks. This was huge progress for Ella Joy. She also drew some designs to go along with many Bible verses we have put up in our room. Thank you to so many of you who are sending us encouraging Bible verses in fb messages. We read every single one of them and many times I write these verses post them up, and meditate on them each day.

Thank you for holding our hands and embracing us when we found out bad news after bad news after bad news that she had 90% leukemia blasts in her bone marrow and that the leukemia blasts in her spine multiplied rapidly and she will be needing the most aggressive possible chemo and radiation possible. We were devastated to hear this, but your encouragement and prayers are helping us through this challenging time. The one thing our oncologist told us is that the fact that it took a little more than a year for her to relapse was somewhat promising.

Out of all hospitals in the nation, there is only one that provides full day school for patients’ siblings. And God just knew how much this meant to me. I am so thankful to say that Asaph is enrolled in the Hutch school from Monday to Friday! This helps us tremendously as we care for Ella Joy. He knows I cannot have Asaph watching an iPad all day!

We have some very specific prayer requests.

1. Please pray the high dose chemo Ella Joy is getting will kill ALL the aggressive t-cell leukemia.

2. Results from Ella Joy’s CT and PET scan show that she still has fluid in her lungs as well as multiple abnormalities. Please pray that they would not be infections and that they would disappear with chemotherapy as her cold and hot flashes and fevers went away.

3. Please pray for especially painful erwinia chemo shots that Ella Joy needs to get in both her legs at the same time. She needs to get 12 total, and she is so terrified of getting them. We were successful in asking for j-tip to help with numbing which is a huge victory (it was against hospital policy to use a j-tip for this, but Mike and I challenged them and they agreed it was sensible and would change the hospital policy), but please pray for God to comfort Ella Joy as there are several more shots to come. (M, W, & F) for the next couple of weeks. Today is officially day 6 of her 28 day treatment plan. (This is just the 1st of many phases to come…) On day 15 & 22, she will get Vincristine. Please pray this chemotherapy would destroy every single cancer cell by interfering with its growth cycle.

4. As she continues to take dexamethasone which is a stronger hormone that may kill some cancer cells and increase the effectiveness of chemo, please pray her body would respond to it and all cancer cells would be eradicated forever!

5. Many of the drugs she is taking have severe side effects but please pray God would protect her from upset stomach, weak bones, and increased blood pressure from the dexamethasone as well as from the muscle weakness, and constipation from the vincristine. Her hair will once again fall out, but please pray she would not be sad again.

6. Please pray for the timing of radiation and that Ella Joy would be able to be scheduled at just the right times. Our oncologist told us that since Seattle is renown for transplant, the radiation time slots are sometimes difficult to schedule and may require us to do additional (full) cycles of chemo while we wait for a slot…

7. Please pray for ZERO and NEGATIVE so Ella Joy can get to transplant. Even when we eventually talk with the transplant team, there are so many life threatening things that could go wrong before, during, and after transplant, so we pray for wisdom to ask the right questions, and that God would give incredible insight to our transplant team.

8. Please pray Ella Joy would continue to eat and have livelihood to do some of the things she used to. I remember shortly after her surgery to put in her double lumen Hickman line, she caught a glimpse of herself in the mirror. She quickly looked away. She had not been herself for some time but the little moments, like when she is coloring with Asaph (and not fighting or arguing with him)… those are the moments I treasure.

It seems like it was just the other day she journaled how excited she was to go on spring break to the Mall of America. We had everything ready, Mike even got a rental car. Now, we will be spending spring break in a hospital room getting high dose chemo. I knew she would ask … about her birthday party we had carefully planned such a long time ago. I had to break the news to her that we will have to postpone it. She was sad, but understood. I am praying that she will survive this transplant so we can soon throw her the very best party ever!

We whole-heartedly believe Jehovah-Rapha is our restorer. Exodus 15:26 “the Lord who heals.” We pray Jesus will continue to heal our Ella Joy! Today I read, ” Nothing that causes us pain or suffering can withstand the healing touch of Jesus.”

Amen, a million times over!

“Surely he took up our pain and bore our suffering, yet we considered him punished by God, stricken by him, and afflicted.
But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.” – Isaiah 53:4-5

So in a similar way to how news keeps coming Job’s way, and the news keeps getting worse and worse… every single time the oncologists pull myself and Mike aside, they give us the worst possible news we could possibly get.

Ella Joy’s leukemia blasts have rapidly increased from 3 to 15+ in a matter of days. When they did her 1st lumbar puncture, for some reason they did not put in mtx, and now the t-cells are multiplying like crazy. She will be getting the most aggressive chemotherapy and radiation possible in addition to weekly spinal taps. The radiation therapy they told us includes radiation to the brain and they said many times kiddos end up with brain damage and they are slower in comprehension and learning and sometimes have deformed faces.
Some need to be in wheelchairs for life.

The high dose chemo has already begun…Ella Joy has been extremely tired and she has been groaning and extremely uncomfortable. Her livelihood is just not the same. She often mumbles and we cannot even understand her.

We really need your prayers! Mike and I cannot do this without your prayer support. With tears in my eyes, I ask you to continue joining me in crying out for Ella Joy!

3-23-17 Update:

Our oncologist wanted to talk to us in private, and I knew he was bringing more bad news. The aggressive t-cell leukemia has spread to her spine. We are beyond devastated. She has been in pain all night unable to sleep. We are only allowed to give her morphine or OxyContin. Last night she got her first dose of blue thunder mitoxantrone, but it was the vancomycin that gave her major head pain. So instead of giving it to her in a half hour span, they are spreading it over 2 hours.

We would like to thank you to everyone for your battle cries and also for reaching out and wanting to help us in our greatest time of need. Our good friend Kelsey is the best person to ask as she knows our current needs. Please contact her at:
(847) 302-8075
Kelsey.myers104@gmail.com

3-22-17 Original post:

I have had a couple of numbers in my head 90 and 30

She was 90 years old. How could it be? The chances of her and her 100 year old husband Abraham having a baby were laughable, in fact, he did let out a chuckle. But Genesis 17 we see nothing is too difficult for God!

In I Samuel 17, we see a shepherd boy
David & over 9 ft tall champion Goliath
“You come to me with a sword and with a spear and with a javelin; but I come to you in the name of the Lord of hosts … This day the Lord will deliver you into my hands … that all the earth may know that there is a God in Israel… for the battles the Lord’s and he will give you into our hand.”
– 1 Samuel 17:45-47.

Gideon & 300 versus 135,000 Midianites.
In Judges 7, we see Gideon learning to trust God step by step. The purpose for having such a small army was that God wanted Israel to know that it was He, and not Gideon and his men who defeated the enemy.

Our oncologist told us Ella Joy’s bone marrow aspirate and spinal tap (lumbar puncture) results were in. She was so sorry that she had to tell us Ella Joy had 90% leukemia blasts in her bone marrow. This was absolutely the most devastating news we were dreading. Even now that percentage with Ella Joy’s aggressive t-cell cancer is rapidly approaching 100%.

The likelihood she can survive at this point is 30% or less. And this was before we found out that she had even more fluid in her lungs. Her oxygen last night and even this morning was low in the 80’s, and she needed a nose piece to get her back into the 90’s. We are so very heart broken.

Please pray that as we pray for Ella Joy, we would cry out that nothing is too difficult for God!
Please pray that as t-cell cancer comes destroying her entire bone marrow with 90% + rapidly spreading to 100%, we will battle cancer in the name of the Lord Jesus! We pray the Lord would completely heal Ella Joy of cancer so that all the earth may know there is a mighty God in Seattle, in Chicago, and over all the world!

Gideon had his modest army of 300, we have our modest chance of 30%. Please pray we would learn to trust Him step by step. May the purpose for such a small chance for survival be so that when He heals her, everyone would know it was God, and not anything or anyone else who defeated this aggressive monster.

Please pray with us that she will respond to the high dose chemotherapy Mitoxantrone, along with a couple other chemotherapies which she will go on after her pet and Ct scan. I am actually writing this post as Mike and I sit next to her as she is getting these procedures done. Please pray that the chemo would wipe out and obliterate every single aggressive leukemia cancer cell in her entire body, and that God would protect her good cells.

Last night was probably one of the hardest and craziest nights for our family. Ella Joy continues to have extreme hot and cold flashes and fevers. She had to fast for a long period of time before getting her lumbar puncture (spinal tap) and bone marrow aspiration. It was heart breaking when she was so thirsty for one sip of water, and we were not allowed to give it. Ella Joy hasn’t been able to sleep or eat well because she has had so many echo and ultrasound procedures one after another as well as so many painful pokes for blood cultures and they many times have to poke her several times (in now bruised areas) because she is so puffy from fluids, it is hard for them to find her veins. They even had to put an iv in her foot and she was screaming in pain.

The pathologist looked at her blood and flow symmetry. The news was what we were dreading. She has 176 cancerous blasts 46%. Her t-cell cancer is so aggressive that it came back even more fierce than the first time. Friends, we cry out and ask you to pray that she would respond to the high dose chemotherapy. We pray that the chemo would kill every single cancerous cell in her entire body.
We will have to make very important decisions about transplant and we need your prayers for wisdom in making the very best choices for Ella Joy’s relapse cancer.

In my last post I mentioned Mike and I made the decision to seek a 2nd opinion for Ella Joy at Seattle Children’s Hospital. We have decided to continue treatment here since they have one of the best survival rates for transplants. That means that we’ve effectively relocated our family to Seattle for the next several months. (We’re still waiting for a room at Ronald Mcdonald House). We’re all together as a family now, but since Ella Joy is relying on Mike’s income/insurance for treatment, we made the difficult decision for him to work in Chicago and fly to Seattle every weekend (starting in April)… and for critical weeks of Ella Joy’s treatment, he’ll stay in Seattle.

In addition, I would like to share something personally that happened to me. When we were back at Luries on Friday and we heard for the first time Ella Joy has relapsed, I was devastated. I could not eat and in my fasting I prayed and cried out for Ella Joy. I had a lot of energy and and such a sharp and clear mind. I was able to wake up frequently to take care of Ella Joy throughout the morning and night. Last night, I started feeling light headed so I decided to eat something so I could be well enough to care for Ella Joy. I threw up and started having cramps in my abdomen. I felt cold chills and my head was dizzy. I found myself laying down hunched over in pain. At this same time, Ella Joy was getting a neck ultrasound done in another room and Mike had to be with her. The hospital called a code blue and I was admitted into the ER. It turns out it was most likely dehydration and stress. Please pray Mike and myself would be healthy enough to take care of Ella Joy.

For now, Ella Joy needs to fast again so she can receive a double-lumen Hickman catheter line. The hard part is that this is another long fast for her. There are so many more challenges along the way, but to see Ella Joy in so much pain simply breaks our hearts.

God is providing even in the midst of the heartaches. Mike was talking to me about the need for a car. Literally minutes later, Doil not only brings Ella Joy her favorite Einstein apple cinnamon bagel, but he offers his car for a week! Praise the Lord!

In the midst of all the chaos in our hospital room, I realize I need time to have kairos moments with the Lord.

“The Lord will fight for you; you only need to be still.” – Exodus 14:14

The oncologists have been painfully honest with us. Ella Joy is not in a good place. Cancerous cells are rapidly multiplying even at this moment. They found fluid in her lungs. Please pray that she would continue to be brave as she experiences all of pains of battling cancer again.

Please never give up praying for ZERO and NEGATIVE. Thank you saints of God!

Here is a picture right before Ella Joy went in for surgery for her double lumen Hickman line

For these past couple of days, Ella Joy was not doing well, and her condition was fluctuating almost hourly. However, given the seriousness of the diagnosis, both Mike and I felt strongly about getting a second opinion. We didn’t think we could get cleared to leave but to our surprise, besides being neutropenic, she was cleared!

She was able to get a platelet transfusion, antibiotics, and we were able to be discharged! We have decided to get a second opinion on her cancer and treatment options at Seattle Children’s Hospital. They have the best survival rates in the nation for bone marrow transplant. So within a few hours we spoke with our doctors on both sides and set the plan in motion.

Everything in Chicago happened so fast as my sister Joanne came to watch Ella Joy and Asaph as we rushed home, packed and took the next flight to Seattle straight to the Seattle Children’s hospital ER.

We arrived safely and are getting multiple labs done and will be admitted to the oncology floor in the next hour.

It was a very difficult choice to make, but talking to Esther about Seattle and having the hospitality and support from our friend Stephanie, we believe God made it crystal clear that this is the very best hospital to treat our Ella Joy.

Even in the details, He works everything out perfectly. We were not able to get into the Ronald McDonald house immediately, and they said it might take 2-4 days even though we were priority because of where we traveled from, and Ella Joy’s diagnosis. Then, right after, Stephanie asked if we needed a ride to the airport and a place to stay for a few days. We are so incredibly thankful! God truly provides! “And my God will meet all your needs according to the riches of his glory in Christ Jesus.” – Philippians 4:19

Depending on the outcome of the tests, we may stay for a week or several months. (We are packing for both)

Update (Sunday 3/19):
Ella Joy is still not stable. Since she has been admitted on a Friday she has not gotten better, but worse. At this point she has been on 5 different antibiotics including penicillin, cefdnir, cftazadime, aztreonam, and levofloxacin. Most have caused her red hives and irritating bumps. It has been a pattern since Friday of getting allergic rx to antibiotic, extreme hot flashes, then fever, then extreme coldness, and repeat. All day and night.

When she goes to the bathroom, she has anal fissure tears all over her lower rectum that causes her excruciating pain as she has diahrea. Many times in the middle of the night I had to unhook all her lines and take her to go to the bathroom. She was shivering cold and to have to take her out of bed was just torture for her. She didn’t make it to the bathroom in time and was shivering and stepping in a puddle of her diarrhea. She was crying because she was so cold and as I was wiping her, there was so much pain. I am sharing this with you because we desperately need prayer.

She was getting way too much iv fluids so we had to ask if they could lower the fluids from 102 to 68. Her whole body was puffy, and it made for waking up to go to the bathroom 10x in the middle of the night.

I don’t let her see me cry. By her side at night as she sleeps is when I am quietly sobbing, praying, and lifting up my hands in surrender to the Great Healer who can do all things.
Our immediate prayer is that this is all a big mistake. But if this thorn cannot be taken out of our side please pray that He would embrace us through this valley.

Please pray for Mike and myself to have wisdom as we make very important decisions about immediate next steps. Please pray Ella Joy would be stable sooner than later.

Mike and I had tears in our eyes as we read your encouraging posts and we are so incredibly thankful for all the prayer warriors crying out for our Ella Joy. Please do not give up!

“And call on me in the day of trouble; I will deliver you, and you will honor me.”
– Psalm 50:15

**Original Post** (3/18)
This is one of the most painful posts we must write. We found out Ella Joy’s cancer has returned. Relapse … our hearts are simply broken …it is something I have always been wary about because I knew Ella Joy was diagnosed with stage 4 non Hodgkin’s lymphoma. T-cell, the kind that is fiercely aggressive. So even after she finished chemo, I was also wary of the term remission, because I always knew there was a chance trace amounts of cancer could still lurk in her body, so I would only say her last appointment was great! Or she currently has no evidence of disease.

We are so extremely thankful to God for one good year she had post chemotherapy. But now we must revisit all the pains that come with cancer and eventually transplant. The first time around she was only 4, so getting poked and losing her hair was devastating but she had not even started school yet. Since then, she has grown into such a happy and thriving 7 (soon to be 8) year old … but sitting by her side inpatient at Luries I see her shivering and we cannot seem to get the fever to break. She cannot go to the bathroom without excruciating pain, and she has cancer running thru her blood. She will lose her hair again, but this time she is more mature and will feel much more insecure. We will have to remind her that true beauty is not defined by hair but by heart. The moment I heard she relapsed , I could not believe it. It was the same as 4 years ago when I was shocked at hearing she had been diagnosed with cancer for the 1st time. Thank God Mike was there for me …to embrace me and shed tears with me.

Please pray for Ella Joy. We will never forget the miracle God had shown us after we were told Ella Joy had 30 % or less chance to survive and she needed a bone marrow transplant. We were devastated but after three days we found out it was a false positive. It was no coincidence. We knew we had multitudes of friends and family interceding and lifting up Ella Joy in prayer. God heard the battle cries and spared her the transplant. “Is anything too hard for the Lord?” Genesis 18:14.

Now my friends, we ask you to pray for another miracle. We know there is another challenging road ahead and even now she is feeling miserable as her chills have turned into uncomfortable hot flashes and hives all over her body. I was reminded recently of Kintsukuroi clay pots… “the Japanese art of mending broken pottery with gold…. Some people believe the pottery to be even more beautiful having gone through the process of being broken and repaired.” Ella Joy is our little Kintsukuroi pot. She has been broken and sealed with silver … and now she must be broken yet again. We pray, this time the outcome will be restored in gold with a silver lining. Out of all days to find out Ella Joy has relapsed it fell on St. Patrick’s day. I thought of how lime green is the color that represents non-Hodgkin’s lymphoma cancer. Mike and I have talked about how we didn’t know if we could go through it all again… and now it is a reality and not a nightmare we can wake up from.

Please pray for Ella Joy, and that God would work another miracle for ZERO cancer and NEGATIVE mrd. Please pray her body would respond to the chemotherapy.

Please pray for Asaph too. When Mike broke the news to Ella Joy, he immediately started crying. Recently he told me when he grows up he wants to find a cure for cancer. He loves Ella Joy so much and has always been one of her greatest cheerleaders.

Please pray for myself and Mike. Please pray God would give us wisdom as we make some very important decisions regarding next steps. Please pray He would carry us when we feel weary hearted. Jesus is our Cornerstone and because Mike is such a strong spiritual leader, he has been such a rock to me and our family. The enemy would love to see us disheartened and discouraged but please pray that we would find our source and peace in the Lord.

That just like Romans 15:13, God would be our source of hope and would fill us completely with joy and peace because we trust in Him. That we would overflow with confident hope through the power of the Holy Spirit.
We cannot thank you enough for your battle cry prayers for Ella Joy.

Update: Thank you all for your faithful prayers! We were going to go to Luries ER tonight but since she is so exhausted, we will go downtown first thing tomorrow morning. Her oncology team wants to do some more tests and labs on her. All we know now from the ultrasound and X-ray is that her spleen is enlarged and her Gall bladder walls are thickened. Your prayers mean the world to us!

“May my prayer be set before you like incense.” – Psalm 141:2

Please pray for Ella Joy.. she got strep and then started to get extremely lethargic. She just wasn’t herself. She vomited once but then when on penicillin got hives all over her thighs hands arms, back… we were not sure if she was allergic to penicillin … she had blood in her stool and she was having trouble breathing as her lung was diminished and her liver was enlarged. Her lymph nodes were also enlarged in her neck. She has been experiencing pain in her right side abdomen. She had nebulizer treatment and needs to continue it at home along with a new antibiotic. She got an X-ray and ultrasound just now and we are waiting results. Please pray!